hate seeing my dad so much pain

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worriedson714
Posts: 46
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

hate seeing my dad so much pain

Postby worriedson714 » Mon Sep 27, 2021 1:23 pm

Hello all ,
My dad started folfiri about a month ago and the side effects have been manageable until the last week when his neuropathy is getting worse and he has bad pain in his butt . Sitting on a cushion or pillow seems to help and it's been when he is walking pain is so bad even his pain meds don't seem to help it out . Spoke to oncologist he checked for infection none and said could be cancer but recommended just staying on the plan . I got a call into CR surgeon to find out if it could be scar tissue from his surgery still growing ?
I have heard it could be fatigue from the chemotherapy or muscle loss in the buttocks causing this but none of that makes sense as it seems to be the inside . Also have heard it could be the cancer growing which means the chemotherapy isn't working . This is the scary one clearly because when my dad was dx he did have alot of butt pain before his colostomy . I am just wondering anyone have experience with this or advice could it be simply a chemo side effect ? Just seems like the doctors are just kind of accepting it and I want to do more to help my dad get out of this pain .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

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beach sunrise
Posts: 538
Joined: Thu Mar 05, 2020 7:14 pm

Re: hate seeing my dad so much pain

Postby beach sunrise » Mon Sep 27, 2021 2:00 pm

The cancer can cause pain and the chemo can cause pain and inflammation.
What do his imflammation markers look Like? Have they done the bloodwork for them?
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

worriedson714
Posts: 46
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: hate seeing my dad so much pain

Postby worriedson714 » Mon Sep 27, 2021 2:25 pm

beach sunrise wrote:The cancer can cause pain and the chemo can cause pain and inflammation.
What do his imflammation markers look Like? Have they done the bloodwork for them?


He gets bloodwork before every chemo treatment do you know what the inflammation markers are ? So I can check the bloodwork I have also my question is why would the cancer just start causing pain now ? It hasn't for a year but I am sure it still could cancer is unpredictable after all .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

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beach sunrise
Posts: 538
Joined: Thu Mar 05, 2020 7:14 pm

Re: hate seeing my dad so much pain

Postby beach sunrise » Mon Sep 27, 2021 2:56 pm

CRP or hsCRP, Fibrinogen, Ferritin, D-dimer, IGF-1 are def the ones onc should be fimiliar with. Look and see, if not checked have them checked. There are a few more but can't think of them at the moment. I will check my bloodwork and let you know.
I don't know about the cancer causing pain just maybe it is starting to press on a nerve or something. Not fimiliar with it but get to the bottom of it. I only mentioned it as one person has said the cancer was pressing on something, causing pain.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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O Stoma Mia
Posts: 1673
Joined: Sat Jun 22, 2013 6:29 am

Re: hate seeing my dad so much pain

Postby O Stoma Mia » Mon Sep 27, 2021 8:26 pm

beach sunrise wrote:CRP or hsCRP, Fibrinogen, Ferritin, D-dimer, IGF-1 are def the ones onc should be fimiliar with. Look and see, if not checked have them checked. There are a few more but can't think of them at the moment. I will check my bloodwork and let you know.
I don't know about the cancer causing pain just maybe it is starting to press on a nerve or something. Not fimiliar with it but get to the bottom of it. I only mentioned it as one person has said the cancer was pressing on something, causing pain.

    Jacques wrote:Here is some more information on available systemic inflammation tests, along with French translations:

      hCRP - CRP/CRP US - Protéine C Réactive Sang héparine si pvt labo, tube gel J0 / N
      ESR - Vitesse de Sédimentation (VS) Sang EDTA J0 / N Se fait sur le tube NFS (prélever 1 seul
      tube si NFS+VS)
      Fibrinogen - Fibrinogène Sang citrate J0 / N Renseignements cliniques, bilan CIVD.
      Serum Protein electrophoresis -Electrophorèse des protéines Sang tube sec tubes gel J2 / N
    To learn more about a particular test, you can look at the description of the test, in English, found on the Life Extension website. Click on the test name, then click on its Description once you have found the right page.
    http://www.lifeextension.com/vitamins-supplements/blood-tests/blood-tests

    There is also a list of inflammatory markers, along with explanations, found in Chapter 15 of the following book:
    Life over Cancer (2009) Keith Block M.D.

      Chapter 15 “Inflammation: Overcoming Cancer’s Fiery Side” pp 324-345

      15.3.1 Measuring Inflammatory Status
      15.3.1.1 C-reactive protein (CRP)
      15.3.1.2 Erythrocyte Sedimentation Rate (ESR)
      15.3.1.3 Fibrinogen
      15.3.1.4 PGE-2 and LTB4 markers
      15.3.1.5 Interleukin-6
      15.3.1.6 TNF-alpha

    rp1954 wrote:You've got a fairly good data set, it is missing inflammation data that is important in various ways to cancer and treatments. Cheapest for us is ESR, $2. Probably best overall is hsCRP it is cheap in the US costly for us but is important for markers; and ferritin taken at least occasionally-it tends to be associated with the cancer. A marker used mostly for liver cancer is AFP but noted more often in Asian CRC papers, it turned out to be very inexpensive for us, and especially important in later years. Another cancer useful, off label marker is ceruloplasmin, that can be useful and targeted. Other inexpensive panels that are worthwhile occasionally are HgbA1C, bilirubin and protein AG, some people need to monitor them frequently on chemo.
    ....




catstaff
Posts: 163
Joined: Wed Mar 03, 2021 11:37 am

Re: hate seeing my dad so much pain

Postby catstaff » Tue Sep 28, 2021 8:28 am

My DH developed this side effect. He just had a CT two weeks ago and the met that could have been involved is nearly gone, so it is inflammation in his case and may be complicated by C. diff. He also has discharge which is indicative of inflammation. The onc prescribed a prescription cortisone cream and we got some OTC hemorrhoid cream with lidocaine, which also helps. It's fairly cyclic for him.

Irenotecan causes or exacerbates inflammation. It's associated with the "late diarrhea" phenomenon. Which cycle is your dad on?
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

worriedson714
Posts: 46
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: hate seeing my dad so much pain

Postby worriedson714 » Tue Sep 28, 2021 7:45 pm

catstaff wrote:My DH developed this side effect. He just had a CT two weeks ago and the met that could have been involved is nearly gone, so it is inflammation in his case and may be complicated by C. diff. He also has discharge which is indicative of inflammation. The onc prescribed a prescription cortisone cream and we got some OTC hemorrhoid cream with lidocaine, which also helps. It's fairly cyclic for him.

Irenotecan causes or exacerbates inflammation. It's associated with the "late diarrhea" phenomenon. Which cycle is your dad on?


Thanks for posting this I am so worried it means chemo isn't working and he is on his 7th cycle tomorrow does every other week whats the " late diarrhea phenomenon ?

Reached out to his nurse nav to get more extensive blood testing like inflammation markers hoping that helps .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

catstaff
Posts: 163
Joined: Wed Mar 03, 2021 11:37 am

Re: hate seeing my dad so much pain

Postby catstaff » Wed Sep 29, 2021 7:51 am

Blood markers won't necessarily be particularly elevated for this type of inflammation. This is generally a localized mucositis.

When they say "no infection" has he been tested for C. diff? My husband doesn't have the characteristic symptom (look it up) to the usual extent, plus with a bag it may not be as noticeable. Chemotherapy in general messes with the gut microbiota and C. diff is one of the most efficient of the "opportunistic infection" agents. Anybody who has spent time in a hospital for major surgery is vulnerable.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

IsmailMehdi
Posts: 37
Joined: Sun May 02, 2021 5:52 pm

Re: hate seeing my dad so much pain

Postby IsmailMehdi » Wed Sep 29, 2021 9:46 am

i hesitated to post this because it's anecdotal at best. I too had pain in my right buttock, i had CT and MRI and there's nothing there. I have been on irinotecan and oxaliplatin during this and the pain has subsided now that i am off chemo. I also take other meds that have potential to cause issues like this. I've had various pain all over that went away after chemo, everyone reacts differently, i just hate that we immediately assume it's cancer.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27


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